A Not-To-Do List for the Chronically Ill

I love To-Do lists. I depended on them when I was working outside the home. I’ve depended them since my bed became my office. The one difference is that, pre-illness, I had fancy notepads and appointment books in which to keep my lists. Now I scribble them on any random piece of paper I can find.

A few weeks ago, I realized I could benefit from a Not-To-Do list that would remind me of my limitations—limitations I often ignore either because I’m in denial or because I want to please others. Unfortunately, I always pay the price physically, and that’s not good for me mentally either.

So here’s a Not-To-Do list for those who live day-to-day with chronic pain or illness (or, as is often the case, both).

1. DO NOT say “yes” to an activity if your body is saying “no.”

I’ve ignored this Not-To-Do so many times that I’ve lost count. It can be so hard to turn down an activity that makes me feel more like a healthy person. When I break this rule, it’s as if I’m a child again, shouting at my parents: “Look at me! I can ride a bike with one hand!”

My most recent “bout” with ignoring my body began innocently enough about a year ago. Two friends were kind enough to coach me in learning Qigong. I learned movements with wonderful names, such as “Against River Push Boat” and “Huge Dragon Enters Sea.” Then came “Ancient Tree Coils Root.” You imagine that you’re a strong tree, sending roots down into the ground. Unfortunately (for me), you execute this by pointing the tips of your fingers toward the ground, putting your weight all on one leg, and then squatting down on the knee of that leg.

For the first few months, I ignored the “one leg” instruction. I stood on two legs and only squatted down partway. I was listening to my body. But one day, I decided I wasn’t progressing fast enough, so I picked up one leg and went all the way down on the other. My knee went “crunch” and, for several months afterwards, I was limping and had knee pain to add to my daily symptoms. Why did I ignore my body? I was frustrated by my limitations and so I rebelled. Lesson learned though: DO NOT say “yes” to an activity if your body is saying “no.”

2. DO NOT call yourself names or otherwise speak unkindly to yourself.

Here’s an anecdote from my book How to Be Sick:

At a retreat in the 1990s, teacher Mary Orr told this story:

She was in the middle of a harried day in which she had too much to do and too little time in which to do it. At one point, while in her car, she realized she was talking to herself in a way she would never talk to others. I don’t remember her exact words, but I remember their impact. They resonated with me because of their similarity to the way I often talked to myself:

“How stupid of me to take this route; it’s always full of traffic.”

“I’m so dumb, I forgot to bring my notebook.”

“You clumsy idiot—you dropped your drink again.”

Mary’s story was a wake-up call for me. I’d never call a friend “dumb” or “stupid” or an “idiot.” But I’d called myself those names. The Buddha said: “If you search the whole world over, you will find no one dearer than yourself.” I decided to take his words to heart and so I began to treat myself as if I were a dear friend. The result? I felt so much better, as if I’d shed a tremendous burden—the burden of self-judgment.

A good test for whether you’re treating yourself kindly is to ask if you would speak or act that way toward a loved one in need. If not, don’t speak or act that way toward yourself. It’s hard enough being sick and in pain. There’s never a good reason to add negative self-talk into the mix.

3. DO NOT try a treatment just because someone said it cured him or her.

I have a theory about many unconventional treatments. Depending on a person’s condition, it’s possible to spontaneously recover from an ongoing illness. Some people do. When that happens, they attribute their recovery to whatever treatment they happened to be undergoing at the time, no matter how unconventional it was. The reason I think my theory is credible is that I suspect I’d do the same thing were I to wake up not sick tomorrow morning.

So don’t assume that any seemingly magic cure is for you. Do your research, consult with those whom you trust, consider your pocketbook. I like to check my tendency to jump at treatments (I get emails almost every day telling me to try this or try that), by reflecting on how, if this really were a cure for my dysfunctional immune system, it’s highly likely it would be all over the internet on sites I’ve come to trust.

4. DO NOT wait until the last minute to get ready for something.

Waiting too long is an invitation for a surge in adrenaline to get you through. If you’re like me, that draining sensation of “coming down” off adrenaline is the first sign of a crash. When getting ready (showering and dressing for an appointment, picking up the house for visitors) try doubling the amount of time you think it will take.

Corollary: DO NOT feel bad or criticize yourself for not striving for spotlessness. That would be engaging in unkind self-talk and it’s already on your Not-To-Do list.

6. DO NOT “shop ‘til you drop.”

That’s for healthy people.

7. DO NOT wear uncomfortable clothes.

Your body is already struggling. Don’t subject it to restrictive panty hose, tight jeans, high heels (of if you’re a man, whatever the male equivalent would be). Exception: If there’s a special occasion that will give you a mental lift if you break this rule, break it. But remember your reasons for breaking it, so that you don’t slip into negative self-judgment if those too-tight clothes start to chafe or those fancy-looking shoes begin to hurt.

8. DO NOT think about pleasures from your pre-illness life, freeze them in time, and assume they’d be as much fun today.

Even if you aren’t sick or in pain, life is in constant flux. Among the healthy, relationships change, job conditions change, bodies change. I’m going to write about this soon in a piece I’ve tentatively titled, “Do You Suffer from ‘Good Old Days Syndrome’?”

What would you put on your Not-To-Do list? I’m looking for more items to put on mine, so please share your thoughts with us.

That is for healthy and RICH people; at least theoretically. Shopping can be an addiction. And it can lead to clutter.

At some point in your life ... and this goes for most people, regardless of their health status ... simplifying your life is usually preferable to cluttering it. At some point, you may find yourself wondering, "Do I really need this? Will this really make me happy? Is this one more thing to organize/dust/wash/clean that I'll be tired of in a year?" And one might be surprised at the answer.

Also if physical shopping is a problem, there is online shopping. Not sure if that's a good thing or a bad thing. But online shopping is extremely valuable for purchases that will improve quality of life. Not all shopping sprees are frivolous.

I don't know what anyone's illnesses are here but these days, with my severe COPD, "Shop till you drop", means going to the grocery store, the drugstore, office supply store, pet store, or any of the other fundamentally basic stores I need to go to. Online shopping for any of that stuff is not an option because I'm a couponer now that I depend on Soc Security Disability.

I had the nerve to go to 2 stores each of the last 2 days in a row, and I'm now "down for the count" for at least today, if not tomorrow, too.

Clothes shopping? Ha! Unless it's at a store that has electric carts, not even an option for me. I do do some of that online, and fortunately, I've rarely met a pair of shoes in my life that I couldn't wear.

Point is, for chronically ill people, I don't think "shop till you drop" means anything like what it used to mean in our lives.

I'm much like you & try to do much of my shopping online. Fortunately, I've found that many sites will honor coupons as you're checking out. I just wanted to share that so you could try with some of your fav shopping sites. :)

I included this one because I still know people who do this even though they're to sick or in pain to be doing so.

I do all my shopping online except that my husband does go to the market for our grocery shopping. But I buy a lot of my good online at Amazon. They even have a discount program if you want things sent at regular intervals.

Thanks so much for reading my piece and for helping each other out with comment.

Hey Toni!!! Yes!!! Love what you put out! Must feel good to see it all hit the tops list.

The best advice I ever got from group therapy, is never compare your pain to others, as that will often lend to "putting yourself down" as you may feel they are handling more pain or illnesses better than you handle Your "little" things!

Drugs, medicine, supplements advice?!? This is a big one I find often. People are like, "Well if you don't try what worked for me - then you must not want help?"

I saw don't take Humira as it did this or that to me -- HEY!! I've used Humira and had those same symptoms as you BEFORE I took one shot of Humira?

And my Dad always reminds that I CAN DO IT! I can't read the paper! Oh my the look he will shoot me! Where there's a will there's way!!

I wonder if you are a man, I don't mean that to be sexist but it seems far more a female thing to just spend the day in town and not necessarily buy anything, which is what I took that point to mean. Once upon a time I could do that, then eat before going clubbing, being out for 12-14 hours - and probably not even sleep afterwards.

Very good advice, Toni. Thanks especially for nr. 2; it’s very important and oh so easy to forget.
I agree with Nr. 7 as well, but I would like to add this: do wear clothes that make you feel good, though. Don’t spend the rest of your life in sweatpants. You deserve to look nice.

Here are some of my own:

Never apologize, never explain

Do not defend your illness. It is wonderful to have someone’s understanding, but you don’t need their approval. If you defend your condition and decisions, it makes you feel weak in favour of the other person. And it is sooo exhausting. Watch out for sentences that begin with: “Yes, but…” That’s a sure sign you are in a defensive position.

Do not do all the 'necessary' jobs first

I often find that when I have done all the things I have to do, there is not enough energy left to do what I want to do, or as someone put it to me once: to do the things that nourish my soul. To avoid a life consisting mainly of chores, I now make room in my diary for things I love to do, like I would a doctor’s appointment.

I hope you find the things I added useful. I find them all very important, but still very difficult to do.

I only recently came upon the expression "don't complain, don't explain" and I was going to put this down too! I have found that complaining and explaining really don't help anyone to understand and yes, are so very exhausting. I have found myself feeling more lonely and not-understood as a result of trying to explain (which often I did out of anxiety that someone thought I was just being lazy, depressed, hadn't engaged 'the power of my mind',,etc)

Slowly this illness is helping me to stop caring so much about what people think.

Also not to do: give yourself a hard time. We didn't choose this. Being in pain, deeply exhausted, isolated, unappreciated, stuck indoors & frustrated is a tough gig and so underpaid. Please don't add to your daily burden by blaming yourself for not getting better, having sugar, or not being able to do something. Explore self compassion, steep in it daily.

Thanks for the list Toni. It's is a very supportive thing to share, even if some of the items to not do are really challenging.

Fiona seems to have misread the quote I used which was: "never apologize, never explain". This doesn’t mention complaining. What I meant was: don't defend yourself by apologizing and explaining. You put yourself in the position of victim and you invite other people to tell you what to do. And, like Fiona said, explaining doesn’t even help. If people don’t believe you, you can’t change their minds for them.

On the subject of complaining I have mixed feelings. I agree that going on about your problems makes you depressed and estranges other people from you. You become absorbed by your illness.
On the other hand there should be room to unburden yourself occasionally. Maybe cry on someone’s shoulder. Then you can move on again.
Also I think it’s very important to share your life with others. Good friends are happy and honoured that you let them close to you and trust them. Sharing each other’s pain as well as each other’s happiness creates a real bond. As long as it’s not always about you and about your illness, I think a little complaining can go a long way.

I suppose we both mangled Henry Ford's 'Never complain, never explain' a bit. I wanted to leave a comment about how complaining and explaining had not led to the understanding from others that I hoped for. Rather I found that almost every time I shared some details about my condition that my friends would minimise, sigh impatiently, ask if I'd tried ice baths ("like that footballer") or - say was fighting my fourth flu for the winter - be told "you need to take better care of yourself".

So I was amazed by the coincidence of what you had written, which referenced the same aphorism that I planned to use. In attaching my comment to yours I sought to back you up and complement what you had written with my own take on this. I didn't intend to misrepresent you. It was a gesture of support.

However from what you have written I see that you have plenty of support and don't want mine at any level. My real life experience is that people DON'T WANT TO KNOW about my symptoms or what I am going through, whatever you say 'should' be the case. Do not think that this has not left me despairing and suicidal on more occasions than I can count.

I linked the ideas of complaining and explaining through that quote in part because in the past I complained about symptoms in order to explain, that's right, to justify why I could not take part in an activity, or it was difficult for me to converse while a radio was playing in the car, whatever.

My friends have been massively disregarding of my symptoms, and, ultimately, me. I came here to be constructive in a forum of people who I thought would be mutually understanding, but today I've learned that there's no such place.

This is some good advice. I don't usually like to put limitations on myself and say "I can't do this or I can't do that", but some of these are things that I really should quit. I have to remind myself that I wouldn't expect a friend or family member who was ill or in pain to overdo things, so why do I push myself so hard? Chronic pain is definitely a learning experience and I find more knowledge and advice every day.

Although it is important to not push past your body's limits, it is also important to not beat yourself up too much if you do screw up.

Since my strength and endurance varies so much from day to day it is easy for me to mess up. I try to judge each day based on how much I could get accomplished during the time periods when I felt mostly functional. Any time where I felt like crap or was a puddle on the floor doesn't count as time I actually should have gotten something accomplished.

I also should stop saying "Sorry" every time I paralyze or become useless, but at this point it is reflex.

Do Not let yourself get caught up in all the "What if I was well" thoughts. It only makes you feel desperation in your situation and helpless to make your life better. "Cause it'd all be better "if" you weren't in pain or sick." What if I had not made this or that life choice, maybe id be better and not sick.. What if I had seen the signs earlier, maybe I could have prevented this etc etc etc This what if also puts you in a place as if your pain and sickness is your fault..

All of the if's and what if's dont help and prove to tear you down mentally when you are already physically ill or in pain..

So My biggest DO NOT DO list item would be that. Do not Get the What if Bug..

I love how you put it. In my new book, "How to Wake Up," I call it that "if only" state of mind. "If only I weren't sick, I'd be happy from now on…" Of course, that's not true…I'd still have my ups and downs in life. That What If and Only If thinking is a source of much stress and unhappiness for us.

I find comfort in not attaching myself to diagnoses, no matter how long ago I was diagnosed. That's how I found Orthostatic Intolerance (OI) after FM and CFS diagnoses. OI helps me understand why doing dishes makes me sicker even if I do dishes successfully this time or several times in a row.

Grieving the 'old me' was a long process. Denial was my friend and enemy. Now I'm working through coping with everyone I've 'lost.' Apparently, many friends, and some family members, do not have the tolerance or cannot cope with the 'new me.' I just have to keep reminding myself that, at heart and fundamentally, I am still the same person they always knew and loved. It is their loss, and I will no longer apologize for not being capable of going as hard and as long as others. I am aware of and accept my limitations. Others are not. I am grateful for and value the friends and family who have stuck by me and supported me throughout these years. I am blessed to have met new people who are willing to understand me.
Thanks for the article. I really enjoyed it.

Well said & good for you! It's part of the journey. I too lost some friends. But, what I've found now is that I feel less stress & frustrated with my limitations when interacting with the friends who were unaccepting. Also, now I have a really great circle of friends who are understanding and accepting. It takes time to build a new circle of friends and support. :)

The hardest friends lost were ones I had been hanging out for years even while extremely sick. They were accommodating and helpful during that time and then one day they told me as a group to never come back and that they could no longer deal with my disabilities.

Being told I wasn't welcome back in a place that had been my safe space and one of the main sources of happiness crushed me pretty hard.

I do have plenty of true friends that stood fast and supported me. The core group that stood with me the most they themselves have serious disabilities. We meet once per week during our Girl's Day. It really is a stress relieving complaints fest, support group, homework helping, and board gaming fun day.

Each of us have been burned by the medical system and had our careers derailed by our health. Depending on who is in the best mental, physical, and social health that week, they are base of the pyramid that holds the other two up. The strong base changes often since we all have chronic health issues that cycle our personal hells.

I am an extrovert and I gather people often. It hurts me each and every time I lose someone in my network. The situation I mentioned above, I lost 20 people from my network of friends in one moment. I also lost a safe space where I could be myself.

Since that time I have added plenty more people to my friend network, but I still feel scarred by that experience and aware that at any moment someone could chose to eat a food that could kill me over my life. My health problems create a level of paranoia that makes making new friends more difficult. On the plus side, being totally open about my disabilities with complete strangers does tend to help those strangers be open about their personal struggles. This leads to friendship openings since most people are used to hiding their personal hells.

For all of you who suffer from chronic pain….these words of wisdom do help. We have to learn to say NO to those things that we would like to do but can't…..When we feel like everyone has deserted us and our whole world is tumbling down on us call us or email us at www.theacpa.org The American Chronic Pain Association is a Self-Help Support Group that truly CARES about you and can help you with Living life as a person again instead of as a patient. You can find a support group in your area or we can help you start a support group.

People who tell you about something that worked for them are just eager to help you! I am one of them. I have suggested this before but will try again. Please try the Paleo diet. Please watch Dr. Terry Wahls Ted Talk on YouTube. Many people have had miraculous health improvements on this diet. The reason it's not all over the internet is because it's a tough diet to do. No grains, no dairy, no processed foods. Many people just aren't willing to try that. I was so sick I would have tried anything and this diet was a godsend for me!!

I wasn't criticizing people for trying to help. I was cautioning people from jumping at every treatment.

As for the Paleo diet, first, it is all over the internet! Second, although I'm truly glad it was a godsend for you, for two years, I was on as strict a version of the diet as one could be and it did not cure me—no "miraculous health improvements."

I love all the suggestions here - so many hit home for me. I'm in the middle of a big crash, caused by a day trip to my great-nephew's 1st birthday (I meant a train ride, socializing - all exhausting despite the wonderful fun) and a week later I dragged my butt out of bed to go to Costco for the dog food I can only get there. While there I slipped on spilled milk and wrenched my back and knee. Yep, I went into a tailspin. So, my 'Not-To-Do' list includes going to big-box stores when exhausted (they're bad enough when you feel good!). Another one is Do Not forget to refill my meds before they run out.

Also high on my list is Do Not forget to thank the family and friends that support you without criticism, the people that never make you feel like you're faking your illness or act like they think you're house is a mess because you're too lazy to clean it. These people, if you are lucky to have them in your life, are priceless.

Well, I have no idea what "I meant a train ride" was supposed to mean - clearly the brain fog was in full swing when I wrote it, because I didn't catch it on the preview! I think I wanted to say "I took a train ride". But who really knows. I'm foggy today too, despite 12 hrs. of sleep. Sorry for any confusion!

I seem to have every taxi driver I have driving me tell me about a cure! I had someone PM me the other day to tell me about this miracle water (which comes from your own tap thanks to a fitment costing $1,000s, not sure what it costs in £s, decided best not to know) that would replace all my drugs. I'm thrombophiliac and I currently have a blood clot, what's the chances of me giving up ACT? And that's just for starters.

my biggest one is do not let people make you want to do things you really don't want to do, guilt you into things. or make you feel guilty because you have to cancell at the last minute.. I still have a big problem with those two.. especially feeling guilty about having to cancel something that was planned. me and my boyfriend volunteer at a church near by basicly to help out this dear lady who also does everything around there, and we have been making plans to go help her "clean up" especially the kitchen is a mess and every time it has come the day to do it i have woken up with a very bad flare and IBS.. i feel so guilty for abandoning my boyfriend to go do this help by himself although he says it quite fine, this past week when he went he even stayed long enough to take the woman to the food bank and brought home alot of food.. granted there was work i had to get done here also but it was optional work and it was stuff i could do while resting in between but i felt so bad for letting them down for the second time due to my illnesses and i know my boyfriend understands because he has fibro and other chronic illness as well..
another big thing is letting the past pre-illness life keep coming up.. I thought i had gotten over that pretty good as well as my boyfriend but we still find ourselves complaining sometimes that we can't do this like we used to or we wanta do that and we cant anymore. but then again there have been ways that we have found to do some of the old things in a newer different way, it just may take longer for us to do them now since we do pace ourselves more and take alot of breaks and know our limits..
i'd say one good thing that has come out of all of this is after 30 yrs of driving i am finally learning how to drive a standard transmission car and doing pretty good. had it not been for my car braking down and our inability to do the work it needed to fix it, because it would cost to much to take it to the garage to do, i would not have bothered probably for quite a while yet to learn how to drive our Kia because i hate driving our big truck all the time when its only me or something..
Much LOVE and METTA,
Tina

Thank you so much for this article! I tend to be my own worst enemy when it comes to staying within my body's ability on any given day. Then I pay the price for days, weeks even months. I am going to print this list and read it every time I'm tempted to do more than I know I should.

I write this because I am still tempted to really push my limit on days I have energy. Partly because I don't know when I'll have that boost again and partly because I really want to finish (insert project, goal, chore or social time here).
Payback is inevitable, tho I've 'gotten away with it' just enough to hope that will be the case again. Realistically, as soon as I feel the heavy limbs and other symptoms I should stop and rest.
I've learned to live with a less than spotless house, but have my areas I'm picky about-kitchen sink, counters and bathroom. Clutter is very overwhelming to me so whenever possible I address piles and buildup. I keep a big ikea bag in our guest room and *anything* not wanted goes in there. Every other month the epilepsy foundation comes by for donations.
Knowing things are going to a worthy cause or someone in need makes it much easier to part with.
As for shopping, I buy gifts at goodwill. I used to choke mt credit card during the holidays-my family is wealthy and I had high expectations for myself. Once I started paying a few dollars for a book or sweater (in good condition) I've never looked back. I also pick up extras when I see something I know a friend or family member will like and tuck it away. Lastly, I buy a lot of gifts and necessities on eBay.....
Christa

Hello Toni and thanks for this important Not To Do list message. I'd love to repost this for my Heart Sisters readers. Not sure if this is a PT issue or a Toni Bernhard issue - may I do so?
regards,
C.

I know I am a bit behind here, Toni, just reading this now - I kept it bookmarked all this time because I could tell by the title that it was for me!

I love my to-do lists, even now, and can really use a not-to-do list. With your first item, I think it is like a child yelling at her parents, "You're not the boss of me!" Doesn't every kid say that at some point?? And it is so hard to admit that our bodies have control over our wills.

Great post and a great list - you have such a talent for expressing just what I am feeling!

I'm so glad you're reading my pieces, even if you're a bit behind! And so east coast/west coast, all children (in the U.S. at least) seem to yell: "You're not the boss of me." If I'd have thought of that, I'd have put it in!